Where It All Began.
On Sat 9th February 2008 I arrived to play a DJ set at one of my regular venues. I had been considerably unwell all day but had had a rather late night a few days earlier and was still tired, so I didn’t think too much of it. I climbed the ladder to the DJ booth and a hot, sharp, burning and pressing feeling took over my insides and I instantly knew something was wrong. It was not a pain I had ever felt before but I told everyone who asked that I was fine and got through the evening the best I could. The following day I went out to meet a friend and tried to ignore all the symptoms in the hope that they would pass. They didn’t and I spent the entire evening at a gig sat down because I could no longer stand. I drank vodka to try and numb the pain but it didn’t. So I went home. The hours that followed were horrendous. I couldn’t get comfortable in bed, couldn’t turn over and couldn’t sit up properly. In the morning, in extreme pain I crawled downstairs, sat awkwardly on a chair in the kitchen and begged my flatmate to call an ambulance. In the ambulance the medics repeatedly said ‘it’s your appendix, it’s your appendix’ but that just didn’t seem right to me. The pain was on both sides and travelling into my chest. Many hours slumped most uncomfortably in a wheelchair in a busy A&E waiting room followed before I was seen by a doctor who waved his hands about dismissively as he told me I had consumed too many fluids and likely just needed to pee. Again, this didn’t seem right. Eventually very late the same night I was taken to a ward where I woke up every patient in every other bed with my screaming as the nurse tried hastily to move me from the trolley to the bed. In the morning I was taken down to theatre for surgery where I had a cyst the size of a small football removed from my right ovary, an endometrioma (blood filled cyst) removed from my left one and endometriosis from the rest of my womb. The cysts were too large to be removed laparoscopically and had to be removed by open surgery. I spent another week in hospital then returned home where I completely underestimated the amount of pain I’d be in and climbing stairs at home was difficult. A week later I was back in hospital again as my wound was not healing. It had burst open on one side and was leaking fluid. I was eventually sent home and ordered to return to the ward every day for the next week to have it cleaned and dressed by a nurse. Two months later the wound had finally healed and things were pretty much ok for a while.
A year later I started to feel unwell again. My stomach would bloat up like a balloon every time I ate, even after just a few small mouthfuls of food and I had persistent stomach pain and constant nausea. I was exhausted all of the time and just couldn’t understand why. I had made a huge effort in the past year to look after myself since my surgery and had become very healthy. It had been difficult to do but I had been determined to succeed and had worked very hard at it. When I started to feel unwell I blamed myself for this and told myself I hadn’t tried hard enough. With the help of a dietitian and a psychologist I worked even harder to improve my diet and my general outlook on life and continued with my healthy lifestyle. I had always suffered with anxiety and found exercise, particularly rowing a huge help in getting it down to a manageable level. I threw myself back into the gym, spending an hour on the rowing machine most mornings, working in the studio on my DJ skills during the day then going back for a swim or a class in the evenings. Despite not being able to hide the distended stomach I had mysteriously developed I was pleased with my progress. I started to feel fit and was in pretty good shape on the outside. But something on the inside wasn’t right.
By 2012 I knew there was something wrong with me. If I ate food I would be completely knocked out and have to lay down immediately. It was not the kind of tiredness you’d expect after a large meal – I physically could not stay awake after just a few mouthfuls. I would retire to bed for a few hours only to be woken again a few hours later by raging nausea and sickness that would send me to the bathroom many times during the night. It became completely uncontrollable and I couldn’t understand how I could be this unwell after all the effort I had put in to be healthy. Some nights I would sleep on the floor as that seemed to help cool me down but never slept for more than an hour before the sickness would return. ‘Oh well never mind’ people would say ‘you don’t look ill’ and ‘you’ll just have to put up with it’ I would arrive at gigs and rush straight to the toilet to be sick. I gradually saw friends less and less as I could not recover from a night out and was just too tired for it all. I decided instead to avoid social situations where possible. I couldn’t explain it to others as I didn’t understand it myself so it was just easier that way. I could no longer work out because of the sickness and pain, had constant urine infections and felt utterly dreadful. More hospital admissions followed, many many tests were done and each time I was sent home in pain with no proper diagnosis. My whole abdomen felt ‘wrong’ and inflamed and as odd as this may sound – my insides did not seem to move in the same direction as me any more. They felt like they were tearing with every movement I made. I then had another cyst removed and was left constantly bleeding. Because of this I was sent to a local gynaecologist. On the day of my first appointment with her I limped into her office in pain, squinting through one open eye with a migraine holding both my stomach and my head and begged her to help.
She studied my notes for a few minutes and said ‘this sounds like severe adhesions. I hope it isn’t.’ ‘What’s that?’ I asked. I hadn’t heard of it before. She explained that because I had had major abdominal surgeries some of my insides might be stuck together or growing together or being pulled out of place and might not be able to function properly any more. She told me there was nothing I could have done to prevent it from happening and handed me a form referring me for more surgery.
In Feb 2013 I had a diagnostic laparoscopy which showed multiple thick adhesions covering all of my inside organs and several loops of bowel firmly adhered to my abdominal wall. When I woke up from my surgery I was told that there were no doctors or nurses available to come and talk to me about my surgery and that I would have to go home and call the hospital the following week and ask what had happened during my surgery. ‘I’m sorry’ I said ‘but this just isn’t good enough.’ Eventually a nurse came wearing her coat and scarf about to leave the building and go home. She hastily explained that some of my adhesions were taken away but most weren’t removed because the gynaecology department ‘don’t do bowels’ I was sent home furious, in pain from the surgery, in pain from the adhesions that hadn’t been removed and told to ask my GP to refer me to someone new for further removal of adhesions.
Three months later I was still in severe pain and by this stage I was unable to keep solids down. The pain from the adhesions was indescribable and with every movement I experienced tearing, stabbing and burning pains that prevented me from participating in the many things I enjoyed in my life. I saw another consultant at the hospital who looked at my patient notes and said ‘I think we will leave it as it is.’ I protested, another CT scan followed and eventually after a bit of a struggle I convinced him to refer me for surgery to separate my insides and remove the bowel adhesions.
On the morning of my surgery on 26th June the surgeon came in to see me shaking his head ‘don’t tell me where your pain is. I will see when I look inside.’ I thought this was a very strange thing to say. I was placed in a waiting room at 7am with several other people who were having surgery that day. One by one they all went down to theatre and I was still sat there at 1.30pm, horribly dehydrated having not been allowed fluids since the night before, desperate for painkillers and cursing who invented the alphabetical patient scheduling system. Eventually the surgery happened and I was allowed to go home the next day and apart from an infection that soon grew in one of my surgery incision sites I had very little pain. I had a great few weeks and was looking forward to getting my life back.
And then the pain came…….
Exactly one month after my surgery I was taken back into hospital. I couldn’t breathe properly and had terrible ripping pains under my ribs and all down my left side. I was bleeding again and couldn’t keep anything down. I had totally had enough of it all by this stage and just wanted someone to come and take all of the pain away so I could finally get on with things. I had made plans for the summer and was looking forward to getting back in the studio. I was extremely fed up. Doctors were suddenly convinced I had a blood clot on my lung and admitted me immediately. More tests were done. No clot was found but an ultrasound showed another cyst on my ovary, a gastroscopy showed inflammation in the stomach and a colonoscopy (yes that one) showed small ulcers forming in my bowel. At one point eight doctors all arrived together and stood around my bed mumbling to each other until one of them informed me ‘We think your severe adhesions have probably grown back again already and there is nothing more we can do for you.’
I should explain their use of the word ‘probably.’ Adhesions do NOT show up on routine tests and scans. The only way to see them is to open the body up and look inside, which itself causes more of them to grow. So they had no way of knowing for sure, they were merely guessing this based on my history of abdominal surgeries, my past problems with adhesions and the fact that I had just been operated on just four weeks earlier. I was told there was nothing else that could be done for me and that I would have to live the rest of my life in this pain. The night that followed was one of the worst nights of my life. The pain was unbearable and nurses told me not to press the buzzer if I needed anything as they were too busy. The following day I was discharged and sent home with morphine and no follow up appointment.
I would really like to say at this point that I am not writing all this in criticism of the NHS. I am hugely grateful for the NHS and in an emergency situation – if I suffered a horrific accident or other major trauma – I have absolutely no doubt that doctors would do their very best to save my life and that the treatment I would receive would be of an extremely high standard. The problem is that the medical world is not looking for a cure for adhesions and does not know how to treat them.
I had realised by this stage that the doctors knew perfectly well what adhesions were and knew they were a result of the surgeries I had undergone but they had no intention of taking them or the distress they were causing me seriously because properly acknowledging them would mean taking some responsibility for their existence and admitting that they didn’t know how to treat them and they did not want to do either. They had told me that because I may be full of adhesions again, surgery was now very risky and that they would not perform it again until the adhesions caused my organs to stop working. Then they would take the adhesions out while they were performing emergency surgery to save my life. This seemed quite ridiculous to me and it was as though they were asking me to wait until I was dying. They seemed more interested in treating the pain that discovering the true cause of the adhesions. They were not interested in finding a cure. ‘You’ve got adhesions. That’s it. Tough luck. Now go away.’ I had become a liability to the hospital and they wanted me to go away and never come back.
In desperation I asked my GP to refer me to a different hospital. On the NHS this can be a very long painful process. I had to just sit and wait. Some months followed during which I tried to make the best of the life I still had. I started visiting an acupuncturist in a desperate attempt to gain pain relief and another dietitian, neither of which were made available to me on the NHS. I had very little money and couldn’t really afford these treatments but felt I had to do something. Sadly because my condition deteriorated so much in this time – I couldn’t tolerate most food again and was experiencing constant sickness – we all mutually decided that I was now too ill to benefit from these treatments and my sessions with both of these people stopped. I was devastated. I had put a lot of time, money and effort into improving my wellbeing and STILL I couldn’t get well. Many more hospital admissions followed again and I noticed a pattern emerging. Every time I ate solid food I would be in terrible pain afterwards then it would ease for a while, then a few days later I would end up in agony in A&E. It became exhausting to keep going through this every time only to hear doctors say ‘There’s nothing we can do for you.’ I felt very pressured at this time to behave normally and eat out with others. Everything seemed to revolve around large amounts of food and and I felt like I couldn’t get away from it. I felt I had to join in with this to be accepted and approved of but looking back now – all it was doing was making me more sick. A person with severe ARD cannot eat normally. It is just not possible. I wanted to enjoy the company of others but every time food had to somehow come and ruin it. Eventually I couldn’t do it any more and removed solid food from my diet once again.
In November, four months after my referral had been sent I received an appointment to see a gastroenterologist, who turned out to be lovely and who told me he could see the pain I was feeling by looking into my eyes and finally concluded ‘We have to do more surgery because we don’t have any other choice now.’ He sent an urgent referral to a surgeon at the same hospital and I went home feeling thoroughly relieved.
Two months later feeling frustrated again (!!!) I phoned the hospital to chase up this referral only to be told there was no record of it whatsoever on the hospital computer system. I was stood in my living room holding a copy of the referral letter which had been sent to me, frantically waving it about while on the phone to them shouting ‘but it’s here’ as if that would somehow enable them to see it. How could the referral not exist if I had a copy of it? It didn’t make sense. I was told they would have to ask the doctor to make a new referral and that it would take a few more months.
I appreciate that NHS waiting lists are long because there are many many patients to treat but from a patient’s point of view and what doctors don’t always take into consideration when making the referrals is that if you are in constant debilitating pain, waiting several months to be assessed for treatment really does mean spending most of that time in bed in pain watching the world go by and feeling very helpless. I decided to track this surgeon down privately instead as waiting was not an option by that stage and paid for a consultation with him at another London clinic. He agreed that certain organs had likely fused together and agreed to perform further surgery for adhesions on the condition that more tests were done first. (Which of course adhesions would not show up on.) This was January 2014. I was fed up and wanted my life back. I felt that the adhesions had in some way or another taken away my social life, my relationships, my studies, my time at the gym, my ability to digest food, my freedom to make everyday choices and any dreams I had had for the future. There seemed no way out. Still I tried to be positive and focus on the things I could still do rather than the things I couldn’t. I tried to swim on the days I was out of bed. I had a spin bike at home that I used when I felt able to. I was determined not to let the parts of my body that still worked stop functioning as well. The months that followed were very difficult and desperate. I phoned the surgeon’s secretary every Monday morning to chase up my referral and surgery date and every week there would be another reason why he could not be contacted. He was at another hospital that week. He was on holiday. He was away on a training course and wouldn’t be back for two more weeks. This went on for months. My body was not functioning properly and the pain was very very bad. I was unable to keep much down and experiencing my worst pain at night, which I believe was my body trying to digest the few things that were still in there and failing because the adhesions were preventing it from doing so. There are no words to describe that pain and even talking about it feels very uncomfortable still. Some nights I lay like a statue on the sofa. On those nights I felt that it was possible that I may not survive until the morning. My body was shutting down and I was forced to not only address that possibility but somehow make my peace with it as well as I lay there because I knew there was nothing I could do to influence the outcome either way. This continued for some time. More hospital trips and admissions took place, often late at night when pain became too frightening to deal with alone. I would receive strong medication and then sent on my way because once again the doctors did not know how to deal with the severity of my adhesions. The IV medication would wear off once I arrived home again and I would be back in hospital in a day or two unable to cope with the pain I was in. It was a horrible lonely miserable cycle. I was often discharged from hospital during the early hours when I would wait for a bus at a nearby bus stop opposite a church. Apart from the occasional car that passed it was very quiet at that time of the morning and I would sit in the darkness and look up at the illuminated cross that was attached to the structure of the church. I had never found faith in any religion at any time in my life but on those nights as I sat gazing up at the church I began to wonder if that was what was missing from it. The thought had never crossed my mind before but sheer desperation had led me to it. I had tried everything to get well and just couldn’t and didn’t know what to do any more. Though I never pursued the idea at that time, those nights I sat there at the bus stop influenced my views on religion and the need that others have for it in their lives. I realised that the option was genuinely there for me should I wish to pursue it and that it was those times of desperation in life that would lead others to do so. I also decided that had I found faith already in my life – this would likely have been the moment where I lost it again because if even that had not helped me in my quest to get well then there would not be anything else left.
My surgery was finally scheduled for May and I began to prepare myself for the journey. Having a date set means you can finally start to plan things either side of surgery and things start to feel like they are really happening. The evening before my surgery was due to happen I received a call from the hospital informing me that it had been cancelled because there were not enough beds available in the ward I was to be admitted to. I was furious. Going in for surgery of that kind is a huge thing and you must prepare yourself mentally for the occasion first. A thousand questions and concerns (some rational and some not so rational) go through your mind in the days leading up to it as you do so. ‘Will it be successful?’ ‘Will there be complications?’ ‘How much pain will I be in afterwards?’ and of course ‘What if I don’t survive the operation?’ To have the whole thing cancelled at the last minute is very stressful. I was told to stay at home and wait for another phone call to let me know when it could be rescheduled. A few weeks later I received the call. My surgery would be rescheduled for the end of June. The preparation process began again and and the evening before the surgery was due to happen the cancellation call came again. There were no beds available. It amazed me that I could walk into A&E on any day in need of pain relief and be given a bed but I could not be given one after a routine surgery that I had waited seven months to have, that had been scheduled in advance!
Finally on 17th July 2014 I walked to the bus stop at 5am, which was very uncomfortable and painful by this point, and got on a bus to the hospital to have my surgery. I arrived at 6am and went to the waiting room to be prepped for surgery where I met a lovely lady called Margaret who was sat with her husband waiting to have surgery under the same surgeon. She had also had her surgery cancelled previously on the same dates as me and had been upset that they had had to cancel their holiday to attend on the rescheduled date. It was a huge help to discuss the disappointment I had felt with someone who knew exactly how I had felt and I was pleased that her husband was there to keep her company before surgery. One regret about the days that followed is that I never got to see Margaret again to see how she was doing.
When I woke from surgery the pain was terrible and I was kept in the recovery room for several hours. I had had a lot of morphine but was awake when I heard the nurses behind me discussing me as if I wasn’t there; ‘This one looks familiar. I think I’ve seen her out somewhere.’ I was exhausted and couldn’t be bothered to reply. Another nurse explained that the surgeon would not be available until the following day to discuss my surgery with me and until he had seen me she was not allowed to tell me what had been found or removed during it. ‘Is it your chronic pain that’s the problem or is it the pain from surgery that’s causing your pain?’ I thought this was a very strange question to ask and I told her that my chronic pain had been caused by the adhesions that I had asked the surgeon to remove so until someone told me whether that had happened or not I could not answer the question!
During my surgery I had thick adhesions removed from my bowel. Most of it had been pinned up very tightly under my right ribs with bands of tissue resembling a thick leather belt. Everything on the right side of my body was pretty much fused together and both sides were under layers and layers of adhesions. It became clear why I hadn’t been able to pass food through. I returned home the following weekend to begin the recovery process again. Recovery from surgery, for those who suffer from ARD is a very difficult and uncertain time. It is the time when it is most important to feel supported by friends and loved ones because there is no guarantee that the adhesions will not grow back. There is no way of knowing how long it will be, how many plans you’re going to have time to make and things you’re going to have time to do before they come back and what quality of life you’re going to have in the future if they do. And that is quite frightening. When I arrived home I was still in shock that the adhesion pain had gone. I kept touching my stomach and wondering ‘Is this what normal people feel like every day?’ because I just could not remember a time when I didn’t have that pain. It was a huge relief to be able to breathe again without pain but the not knowing part was terrifying. Six days after surgery I felt my right side begin to stick again but I ignored it and tried to get on with things. It was painful but nothing like the pain I had had before.
There are other things about the recovery time after this surgery and about my life at this time that I have left out because talking about them is still too difficult. It was a very lonely time. I was grateful for the few people I had to talk to but that summer I saw very few people at all. Several months later I had my follow up appointment with the surgeon who told me that I could not have a copy of the photos that he had taken during my surgery because he had deleted them. He had showed them to me briefly the day after surgery and I had a vague memory of what they had contained, mainly of how severe the adhesions were but I was on strong medication and recovering and it had not been the right time to ask for a copy. They had been stored on his phone because the hospital camera system had not been working. I had specifically asked for photos to be taken during the procedure because I was pretty certain that I would need to show them to another doctor or surgeon in future and also wanted them for my own records. He told me that he was going on paternity leave and that I was not his priority. I left the hospital in tears and returned home to make a complaint, which I got nowhere with – I was informed that he was perfectly entitled to store photos on his phone to show other surgeons and could delete them as and when he chose to, without sending copies to patients who had requested them. I was very unhappy about this.
After my last surgery 18 months ago things were better for a few months. I was still having digestion issues but was able to eat soft foods again without too much difficulty. The nausea disappeared instantly and my overall quality of life improved. I still had pain, but it was a less intense pain that left space in my life for other things. I had some nerve pain as a result of being cut open a lot of times and some of the adhesions had grown back. I managed reasonably ok like this for a while. Feeling ‘reasonably ok’ for someone suffering from ARD is probably about the same as a healthy person feeling ‘quite unwell.’ I was still not well but compared to the pain I had experienced before surgery it was an improvement and I learnt to be happy with what I had. I began to make plans for the rest of the year and for the future and for the first time I felt that despite being in some pain, I might achieve all the important goals I had set myself. I was keen to get back to doing all the things I loved as soon as possible.
In January 2015 I made a huge effort to make some further changes to my diet (which you can read about in My Juicing Journey) and was soon feeling the benefits but I was still very worried that more adhesions may be growing inside me again and could spiral out of control at any time. This is normal for someone with ARD. The trouble with surgery to remove adhesions is it’s a bit like ridding your garden of weeds – it’s never very long before the damn things start to come back again. You are always waiting for THAT new pain. That sharp, ripping feeling that can mean only one thing. Adhesions are back, creeping over your insides like a vine, stopping them from working properly and it’s not going to be very long before your day to day life is severely affected. I didn’t want to believe that it would happen again so I tried to put the thought to the back of my mind. By April I was feeling particularly exhausted and I was having to increase the medication I was taking because I had started to have a lot more pain. I was regularly in hospital for bowel issues again and frequently being told that if I ate normal foods, with my history of adhesions I was putting myself at huge risk of a serious bowel obstruction. I had had partial obstructions which were unbearable and could not control the pain caused by food. I realised that I was once again going to have to remove solids from my diet to ovoid becoming fully obstructed.
Then in June last year while on a weekend trip to Cornwall – THAT pain arrived….
I knew it was coming but was completely unprepared for how bad it was going to be. Although I couldn’t see what had happened I knew that some of my insides had glued together, an attachment had been made somewhere and that it was a serious one. The irony was that I had increased my pain medication that very weekend but the much stronger dose was now not sufficient. I went to bed that night in my hotel room wondering if I would wake at all the next day. The timing of this really could not have been worse. I was beginning to get parts of my life back and looking forward to doing things and I was furious.
I feel it’s important that I point out that I did NOT do anything to make the attachment happen. I often get people saying to me ‘you shouldn’t be going out.’ and while I realise they mean well it is not a helpful thing to say. I am limited in what I can do due to the pain I have but if I leave the house and go somewhere and do something it is not going to make adhesions grow. If I go over to the shops it is not going to make adhesions grow. If I travel it is not going to make adhesions grow. If adhesions are going to grow they are going to grow regardless of what I am doing and they are not going to stop for anything or anyone! They will grow all over my insides even if I am laying still in bed and there is absolutely nothing I can do to stop them. All of the things I choose to do are MY choice because I refuse to let adhesions take away any more from me than they already have.
In September I noticed another huge increase in pain and it was around then that the nausea returned. Feeling sick all of the time is horrible and very limiting. It is very difficult to think about other things when you have a need to vomit all the time! I began to panic if I had to travel somewhere and a toilet wasn’t available. I began to have serious migraines every few days which I realised were both a side effect of the medication I was taking and a symptom of ARD itself. Severe migraines lasting around 24 hours that would leave me exhausted and only able to recover briefly before another one arrived. In November I had what I believe was my worst migraine ever. I carried on because there was little else I could do but despite being told by doctors there was nothing that could be done any more I wasn’t able to accept this.
Right now – the adhesions have taken over all of my insides and are preventing them from working properly. The pain is constantly there as is the nausea. I am having bad migraines every few days. I cannot eat solids any more without getting an obstruction and ending up in hospital and due to the irritation caused by adhesions attached to my stomach pulling it in all directions, I cannot always keep liquids down. Some days are better than others with the sickness – some days I need to be sick all day and others only a few times. Doctors now think my abdomen is frozen with adhesions and all of my internal organs are tightly encased within them. The adhesions are now pulling on my back causing pain there too. The chronic fatigue is unbearable and affects everything I do. There are many many others suffering from this and many who have had way more surgeries than I have. The problem I have is the a severity of the adhesions and the speed at which they are growing inside me. Some people have adhesions that stay the same. I can feel mine growing in me every day. I have had to accept that while I try to remain positive and embrace the better days when I can do the things I want to do – going out can result in extra days in bed. Still I pursue pain relief. There is no medication that thins or dissolves adhesions. The only way to remove them is to have surgery and I now cannot find a surgeon in the UK who will treat my severe adhesions due to the risks involved in doing so. There is no hope at all for my recovery here and I am having to look elsewhere for help. I pray for a cure for adhesions and hope that one day one is found and that nobody will suffer from this terrible vicious thing ever again, but I believe it will not happen in my lifetime.
I would also really like to hear from others who have been affected by ARD. If you have and can relate to my story, want to share yours here or have been affected by something you’ve read here get in touch with me via the contact form..